February 27, 2015

I didn't know if she had months or years left on this earth but her health was declining. I had heard it happens frequently after couples who have been together for decades are tragically separated by death. Her beloved husband of some sixty years had died the previous year. It was decided now was the right time for her to transfer guardianship; a sad but necessary reality for aging parents with disabled children.She looked into my eyes and said “I
know you're going to take care of my baby girl.” After thirty plus years of friendship it was as simple as that. I nodded my head, making my promise to do just that. The details would be ironed out later.

And so my guardianship began and my relationship with her daughter took on a new dimension. ( I will save my explanation of the actual guardian process, education requirements, attorney involvement, court involvement, background checks, and the paperwork required for another time and post) but i will say now that took roughly four months for the entire process to be completed.

And sadly one of my first tasks as guardian along with (her caretakers) was to began a coordinated effort to prepare her and see her thru the decline leading up to her mothers death. Coping with her mothers declining health was frightening for her at times. We needed to be sensitive to her emotional needs and respect her decisions and never force her to visit her mother if she wasn't feeling up to it. She did well however and visited quite regularly though for the next year.

Then the call came; mom had died. I quickly made arrangements for a flight out and
coordinated with the house manager on how we would approach telling her that
her mom had passed.

The three of us sat together in close a circle in the office of the group home and I told her
that her mother had gone to heaven. She looked down at the floor,
my heart was breaking for her. I thought about the sadness we feel when someone we love dies, the anger, the tears and how missing them sometimes makes our insides hurt. Truthfully I was feeling a bit of all of those
emotions myself having lost my dear friend. So I told her she may feel those thing herself and it was perfectly ok if she did.

The holding my breath I asked her “would
you like to tell me how you feel?” She looked up and me and said as clear as a bell, “happy.” I was stunned! “Can you tell me why you're happy?” She has very limited verbal skills she usually can put three words together in a sentence but rarely more. Then in a clear voice filled with conviction she said “ mommy and daddy are together, I'm happy”What a beautiful thing!

February 23, 2015

Do you have a special object that
evokes special memories of a special person or a wonderful time in your life?

I love stories. If I didn’t love
tell stories I wouldn't be a blogger.

Most often the story behind the object
is more valuable to me than the object itself.

My grandparents were immigrants living
in Brooklyn N.Y, he was a baker she a stay at home mother of five. The 1920’s
were not a very prosperous time for them, but they got by. There were not many
luxuries in their home; probably the most valuable of their possessions was her
wedding ring/engagement set and yet it was very modest by any means.

One day she lost her engagement ring.

Popa went to the local jeweler and had
him make a ring for Nana. I can imagine that the $25.00 he paid for it was a
lot of money back then. Nana loved the sentiment, she loved the ring, it was
sweet and beautiful with two hearts back to back but it wasn't herring.

Did you ever dig in the cushions of
the couch of change? My Dad did one day when he was about 12 and came up with
something a bit more valuable than a few pennies he was looking for; he found my
Nana’s engagement ring.

She slipped that engagement back in
its place on her finger and the heart ring on another finger and wore them
both. She in fact wore the engagement ring until her death at 95 but the
heart ring had a different fate.

Many older folks give treasured items
to their loved in order to see them enjoy them as opposed to leaving them in a
will. She was a wonderful Grandmother who lived with us and was a
tremendous part of my life.

Years later Nana gave that heart ring to Daddy and
he immediately passed it to me.I
received that ring 38 years ago and have worn it every day. Sadly, Popa died
when I was six. I know Nana and Daddy saw my joy when I was given that ring.
Now that they've all passed I feel like I wear their hearts all the time
glistening on my finger.

There’s a great place I know about to
get a ring or watch or piece of art to start a new memory by adding a new
treasure to your family. There are some wonderful items there. Have you ever
visitedInvaluable Auctions? Why not visit
theirwebsiteand check out their great selection of rings.

Do you have a special piece of jewelry
with that has a story worth telling? I'd love to hear it!

February 19, 2015

She is a joy! She is usually smiling, she says" I'm happy" twenty times a day, she loves music, loves to dance and adores food and eating out. I am a lucky woman to be able to be be her guardian and her friend. She lives in a beautiful group home, her roommates are truly her family, her team of caretakers love her to death and God has blessed with good health.

My girl was born with (fragile x) syndrome and she has many, but not all of these symptoms.

intellectual disabilities, ranging from mild to severe

attention deficit and hyperactivity, particularly in young children

anxiety and unstable mood

autistic behaviors

sensory integration problems, such as hypersensitivity to loud noises or bright lights

Recently one of her doctors decided on a course of
treatment for which I did not understand or agree. Although I've have a lifetimes worth of opinions I am by no means unwilling to listen to a doctor’s reasons
for treatment or medication. So I called and I faxed and I got no response, no
explanation. NOTHING!

When I took over her guardianship, she had doctors
in place and it never dawned on me to check on their credentials. Why would he decide on doing xyz and then refuse to
discuss it with me? So me being me, I got suspicious and did background
check of the doctor.

This doctor WAS and IS without question a criminal. He has a documented history of personal
use/addition to drugs in two states. There is a record of malpractice, a
history of prescribing adult psychiatric meds to children, he has been cited
numerous times for over medicating venerable foster children in clinical drug
trials by the FDA and he’d been arrested for drunk driving and possession of
cocaine (and entered into a court diversion program).

It is beyond me how he was allowed to see patients with this record. And you can bet she will never ever enter his office again.

I am bewildered with how the lenient
medical licensing boards are with doctors and it is scary to think how our most vulnerable are at
risk if exposed to these horrible doctors.

I needed to do a better job
reviewing her health care providers; something I have come to regret.